The Open Road
Returning to school from spring break early one Sunday afternoon. My dad at the wheel, me riding shotgun. Ahead, past the Poughkeepsie exit, the mountain is pocked not only with snow and sparse shrubbery but with shadows and light, the sunniest stretch of highway always just out of reach.
Retinoblastoma is, you guessed it, an illness of the retina. A cancer, to be exact. While a relatively uncommon form of cancer, it is the most common eye cancer found in children, and usually detected within a year of life. It develops in utero when the miniscule cells called retinoblasts divide and multiply uncontrollably instead of maturing into full retina cells. This malfunction coupled with a genetic mutation can plant the cancer in both eyes, terming it bilateral.
I, of course, knew nothing of this at three months old, but it was only a matter of time.
My dad says when I was little and had trouble falling asleep, he would strap me into my car-seat and take me for a drive around the neighborhood. Sometimes there would be carousel music in the cassette player. The old station wagon made it easy to feel the flaws of the street beneath. Whatever magic worked itself on me, it would only be once or twice around the block before I was out like a light.
At sixteen, after passing my permit test at the DMV Testing Center, I was naïve enough to be thorough. At the tail end of the paperwork was a clause that read something along the lines of “I guarantee that I have no medical conditions that could affect my ability to drive safely.” My parents and I knew full well I could not guarantee this; I had passed the vision portion, but just barely. My decision to speak up resulted in a drawn-out, three-week-long affair of trips to doctors, fielding signatures. It was embarrassing, that I was under this constraint for shooting off my mouth. I remember thinking, That’s what you get for telling the truth.
“You were always such a good traveler,” my mom says of my toddler self. “No complaints or are-we-there-yets from you. You just loved the ride.”
She does not mention that I had to be a good traveler, or the whole ordeal surrounding my eyes would have been doubly hellish for her.
“What about me?” my sister, younger by three and a half years, asks. “Was I a good traveler?”
“Oh, honey,” my mom says, “I’m sure you were, too.”
I am descended from travelers. My mom had lived in Detroit and Cleveland by age three, and after she met my dad in college they went from Cincinnati to Washington, D.C. to New Britain, Connecticut in a decade. Their first time in the last of these places was the weekend of my dad’s interview for professorship at one of the state universities. They flew out of Hartford thinking it wouldn’t be the end of the world if they never saw it again. But here they’ve been for twenty years.
My sister and I have always been remarkably close, but that closeness comes with a complex undercurrent. I observe her observing me and wondering how memorable she is, how important the story of her life has been, next to me and mine.
The reality is that she is beyond memorable, and important, and lucky to not have been memorable and important in the ways I was. Would my parents truly remember how cooperative a traveler I was if my vision and life had not depended on it? Would they recall so vividly an infancy that had not tested them, had not drawn out their darkest emotions? Being memorable has its price. She will know this eventually.
I quickly grew accustomed to being on the road, although not in the sense of packing up life and moving from place to place – just in the sense of going into New York and back home within half a day’s time. I remember my dad waking me before dawn and bundling me into the car, those early days when the world seemed surreal and my only job was to keep quiet and let the grownups handle everything. Besides, at a certain point, after the waiting room, when we finally made it into the doctor’s office, they would put a mask over my face and I would fall asleep again anyway.
Late-stage retinoblastoma will most likely take a person’s sight, possibly even her life. Fortunately, thanks to chemotherapy, laser therapy, radiation, and other techniques, seventy to eighty percent of bilateral cases can be cured. But the people who escape retinoblastoma relatively unscathed are still at risk for numerous other illnesses, particularly skin cancer, due to the link between pigments in the eye and those in the skin. It can also heighten sensitivity to physical injury, or even the potential for physical injury, of any kind. A survivor may throw her hands up in front of her face at the slightest trace of a threat. She may have to wear garish, protective goggles in gym class up through eighth grade. She may despise gym class, and what it represents, for a long time.
For as much distance as my family covers, it tends to concentrate in the same places. My mom’s side lives in Baltimore and D.C., my dad’s side across Ohio. We split summers and major holidays between them. They’re equally stressful trips, in their unique ways. Driving five hours down the Eastern Seaboard is a different kind of hell from driving twelve hours west. But when I look at the patterned pavement rolling every which way beyond the car window and feel the rhythmic jouncing of our vessel, it isn’t hell at all.
The trips to New York have petered out to annual checkups. In the early years, when I was still under the gaze of the Evil Eye, it was every few weeks, until it was every few months. But each time I set eyes on the city was, and is, like the first time.
The road-trip soundtrack in my earliest years consisted, as far as I can remember, only of carousel music. Few other things in my life have been the object of such passion as carousels and their music, old songs out of Tin Pan Alley. My dad says listening to those songs is what made me so smart.
“Children need paths to explore,” Bruce Chatwin wrote, “to take bearings on the earth in which they live.” I did not choose the path my childhood ultimately explored, but it was an exploration nonetheless. My parents, at a loss for what to do with a newly diagnosed three-month-old, followed someone’s recommendation to a specialist on Manhattan’s Upper East Side. The hospital, with what appeared to me to be cathedral-esque proportions, became almost a second home, given how often we found ourselves there. I explored sterilized surfaces the way other children might explore backyards. I tried to take bearings but wasn’t always successful: in fact, those bearings were often taken through evasion attempts, scrambling away from nurses holding eye-drops. And I may not have intuited it so articulately at the time, but something inside me must have known that the way I lived on the earth would not be normal living.
I tell people at my central Pennsylvania school that I’m from Connecticut and their eyes widen. They say, “Wow, how long is that? Four and a half hours? That’s a long drive.” I think, Not really.
At eighteen, I work summers directing parking at my city baseball stadium and have landed a marketing internship at a local playhouse. What I do not do is drive, save for the occasional loop around an empty parking lot with my mother giving orders from the passenger seat. My permit has expired, and I am not sure what it will take to renew it. I plan to sort it all out this summer. Even if some days I hardly trust myself to see, even if I won’t require a car once I’m in New York where the subway rules supreme, I should probably know how to drive. It’s just one of those handy skills.
St. Jude Children’s Research Hospital states that about 250 to 300 cases of retinoblastoma are recorded annually. I cannot count the number of times I’ve wondered how and why I am a part of this statistic or questioned the omnipotence and benevolence of the omnipotent, benevolent God I worship, but it has been at least that many.
Over the phone in my dorm room one night, my mom admits that she hasn’t felt like herself since moving to New Britain. I wonder if this is because she’s stayed as long as she has. No other single city has taken twenty years of her life. I think in some ways she was happier on the move, always anticipating the next place, the next phase. If this is where she has finally landed, is this all?
I will live in New York. I have already promised myself this. It is the city that saved me, the city I was always so glad to see because it meant that the procedures had worked, that I had a seeing eye, that our team of the doctors plus me had beaten back the beast. It is the city to which I return again and again. But it does not for a moment scratch the traveler’s itch embedded in my skin. If I ponder it for long enough, my mind leaves the road and takes to the air. So much world, so little time. I hope I can use mine wisely.
Two failed attempts at the permit test left a friend of mine discouraged and humiliated, to the point that she regarded it as a personal shortcoming and became convinced something was wrong with her. I did my best to console her and tell her otherwise, but it was only upon her third and successful attempt that I realized how truly and ultimately equal we all are: all fighting battles, all able to share in each other’s victories.
And after all this, I can see fine. Fear will not hinder me finally from learning to drive. Why should it? But still I pause. The lack of certainty that marked the beginning of my life surfaces once again. Will the open road be kind to a one-eyed girl? Will it show her the same mercy as a driver that it did as a passenger?
Cecilia Giglotti
Cecilia Gigliotti is a sophomore at Susquehanna University studying literature, creative writing, music, and Italian. Among her fascinations are carousels, cathedrals, names, musical theater, the Roaring Twenties, and The Beatles. When she tells people that she is a five-time school-district spelling bee champion, they only ask her to spell antidisestablishmentarianism. Her Halloween-costume history ranges from Peter Pan to Kim Possible to Holden Caulfield. She eats four apples a day on average and is partial to Honeycrisp. She loves jogging and the beach, but not simultaneously.